Compassion and quality in the care and treatment of the mentally disabled underpin Udaan, a programme that places its faith in institutional reform and community awareness
There’s a hint of quiet desperation in Prem Dangi’s voice as he reflects on why he has been in and out of mental health institutions for two decades. “My mind keeps breaking,” he says. “If I take my medicines regularly and if I stay straight — no alcohol and no cigarettes — I can be as normal as anybody else. But abstinence is hard for me.”
Life and luck have been hard as well on Mr Dangi, a 45-year-old Nagpur native who struggles with the burden of bipolar disorder. “In the bad times all I do is think and think and think,” he adds. “I have got to this point by improving bit by tiny bit. I work when I’m well and I get admitted when things go downhill. But I’m sure I can find a way to avoid coming back here.”
‘Here’ is the Regional Mental Hospital in Nagpur (RMHN) and it has been Mr Dangi’s home for the better part of 10 years. With a family that, he says, has not been supportive, the unmarried Mr Dangi needs sustenance and understanding, medication and care. He is not alone. Nearly 150 million people in India have some manner of mental illness. Fewer than 30 million seek treatment and at least 10 million of them have to cope with severe mental disorders.
Established under British colonial rule as the Nagpur Lunatic Asylum in 1864, RMHN typifies institutions of its kind, facilities created to sequester behind walls and bars those with mental disorders, suiting the demands of a society fed on stigma and prejudice about such conditions. How, then, can care and treatment at these institutions be made more humane, more patient-centric and more rehabilitative in nature?
That’s the question at the heart of Udaan (or flight), a Tata Trusts’ programme designed to help bring dignity, first and foremost, to the care and treatment of India’s mentally disabled. Undertaken in collaboration with the Maharashtra government, the idea is to ‘transform through reform’. The RMHN effort is one half of the Udaan initiative and what emerges from it could inform how standards at government mental health facilities in India can be radically improved.
Udaan’s second big component, widely disbursed and with the potential for greater impact, is the ‘district mental health programme’ (DMHP). A community-based intervention under which about 200,000 people have been screened thus far for mental ailments, the programme is currently operational in four rural subdivisions of Nagpur district. DMHP aims to provide the blueprint for a mental health mapping of the entire population of Maharashtra, and a more accessible treatment procedure for those who require it.
The last constituent in Udaan is the most recent. Activated in February 2019, this is about developing a ‘technical support unit’ to help the Maharashtra government fashion an integrated mental health package that enhances the availability and quality of care. In the package are training modules for mental health workers and data analytics to measure the nature and extent of mental disabilities.
The RMHN piece of the Udaan endeavour is concerned with institutional reform. The need for it was immediate when the programme kicked off in March 2016. One of 43 government psychiatric hospitals in the country — many of these are more than 100 years old — RMHN was ripe for a recast of its functioning. Most importantly, the hospital needed a sea change in the way it viewed and cared for patients.
RMHN has much going for it. Sprawling over a 52-acre campus in Nagpur city, on paper it serves a populace of some 24 million from 11 districts in the Vidarbha region. Unusually for a public hospital, it houses just over 500 patients against a capacity of 940. Knowledge about the care and treatment of mental disabilities resides within the institution, but there were several organisational facets crying out for an overhaul when Udaan made its debut.
Improvements were required in quality of care and infrastructure, patient welfare and recovery. Crucially, RMHN was lacking in the empathy that is essential when treating the mentally unwell, human beings at their most vulnerable. Udaan has, in the three years since its launch, set in motion a process of change that addresses these deficits. The intent is to modernise and remodel the institution, to make it a centre of excellence and learning.
Encased within a participatory framework that includes patients and staffers, with inputs from independent experts and senior government officials, Udaan has employed a four-pronged approach to move ahead. Structural reform, process and clinical reform, staff training and capacity building and, not least, individual care for patients — the programme has covered plenty of ground in its quest to make the everyday lives of RMHN’s inmates less of an ordeal.
The raft of upgrades at the hospital have resulted in refurbished wards, an upcoming day-care centre and automated data management to streamline patient tracking and treatment. Cleanliness and personal hygiene are priorities now and the programme has gone far in providing patients with simple comforts: a movie club, televisions and phones in the wards, a library, open spaces, a meditation room, dance sessions, hair salon and beauty parlour, a buffet system for meals, in-house farming and coloured clothing instead of drab uniforms.
The effects of the enhancements on patients and the institution have been enormous. “The movie club, the library and televisions are welcome; they give our minds some comfort and quiet,” says Shubhangi Gavai, who has been at RMHN since 2001. Abandoned at an orphanage when she was six-months-old, the 30-year-old Ms Gavai spent most of her life in shelters before being moved, permanently it appears, to the hospital. “Everyone needs support and I don’t have anyone on the outside to give me such support. This hospital is my only option.”
Getting thus far has been a slow and steady slog for Udaan, part discovery, part adventure and all hard work. A lot remains to be done — the hospital’s sewage system is a stinker and fixing its decrepit pipes and drains has been a work in slow progress — but the way forward is clear after a breaking-in period when the gravest concern was having staffers at all levels accept and implement the recommended changes.
News about the Tata Trusts stepping in was met with hesitancy and, worse, suspicion by the personnel at RMHN. “They feared that the Trusts were going to take over the hospital, that their workload would increase,” says Praveen Navkhare, a long-serving psychiatrist and the deputy superintendent of RMHN. “We laid misgivings to rest and we convinced our people that we were striving towards a common goal: the betterment of our patients.”
Staffers were surveyed, workshops conducted and training imparted to allay apprehensions. A committee comprising staffers, patients and others paved the road to reform and into the RMHN lexicon came terms such as ward champions and master trainers. The emphasis in those initial days was on getting the hospital staff behind Udaan, particularly the attendants, the first and most frequent point of contact for patients.
The monotonous protocol entrenched at the hospital — with the dress code, the meal system, keeping patients locked in wards, etc — had to be ditched. “Our biggest worry was patients running away and preventing that took precedence,” says Anagha Raje, a social service superintendent who has been with RMHN for 28 years. “Fear was the weapon used to keep patients in line. None of the staffers wanted to venture beyond prescribed job duties, nor did they want to adopt a different way of working or thinking. There was no reward in doing so.”
Caregivers in the mental health setup have it tougher, arguably, than their counterparts in other medical-care segments. The conditions in which they work are hardly favourable and at RMHN the situation is further cooked by an acute shortage of staff. Chronic and continuous, this has been a crippling impediment. “The work pressure is crushing,” says Seema Kshirsagar, a nurse at the hospital for six years. “I just don’t have enough space, time and energy to devote to patients. It can get pretty frustrating but we have to cope.”
What’s being accomplished at RMHN is, in the context, out of the ordinary. “We have learned and we have changed,” says Ms Raje. “It started with human rights and what this means in our context. Our perspective is different now; we have found a better way to discharge our duties. Patients have got their identity back, they have found some purpose, they know about their rights and can insist on them. They can picture a day when they rejoin their families and reclaim their lives. I have never seen this happening in all my years here.”
The wish list for more improvements at RMHN runs long. Dr Navkhare is hoping the hospital will score higher on sanitation, get a new sewerage system and won’t lack for medicines. Ms Kshirsagar says RMHN needs an emergency centre, much like an intensive care unit in regular hospitals, and a focus on rehabilitation. Ms Raje would like to see patients being treated by a team and for the hospital to set an example. “We cannot afford to go back to the old ways,” she says.
Madhuri Thorat, RMHN’s medical superintendent, juxtaposes the good and the indifferent in her reading of the institution. “Small things have gone a long way in bringing colour and happiness to the lives of our patients,” she says. “Our limitation is staff shortage. We need to create new posts but we haven’t even been able to fill the posts we do have. Overwork stresses out our staffers, especially attendants and nurses, and we are beginning to see their health suffer as a consequence. We need more people. We need more resources.”
The DMHP module in Udaan is not beset by the sort of troubles that have stymied the hospital. Initiated in early 2018 and covering a population of five million, the programme’s primary objective is to create a collaborative, community-based model that boosts awareness of mental health issues, enables early detection and provides treatment closer to the patient’s home. Making the model replicable means that it can be implemented in the rest of Maharashtra and elsewhere.
What has been proposed and is being executed is a partnership with the state’s public health system at the district level. In the pipeline are a mental health helpline, day-care centres and halfway homes. Once-a-week clinics have been set up in four rural hospitals in Nagpur district as part of the programme. This will help in classifying and identifying mental disabilities in the community and bring sufferers into proper treatment streams. Additionally, it will reduce the cost and improve supply of medication.
The screening process in DMHP has led to about 600 people with mental disabilities receiving medical attention. One of them is Pallavi Tajne, a 26-year-old from Brahmani village in Nagpur district. Diagnosed as psychotic at 15, she had been treated at private clinics for three years before her father, Tukaram Tajne, recently stumbled on the DMHP clinic at Kalmeshwar Rural Hospital.
It’s the elephant in the room that society would rather wish away than deal with. Mental disorders tend to have that effect on the supposedly sane and the reasons for it range from cultural taboos and familial shame to media portrayals of mental illness and plain old misinformation.
That should not be. The World Health Organization estimates that mental and neurological disorders are the leading cause of ill health and disability globally. Mental disabilities are truly universal and they can be triggered by a variety of psychological and social factors: genetics, poverty, inequality, abuse, trauma, childhood experiences, bullying, isolation and substance abuse.
The most common worldwide are depression and anxiety, followed by bipolar disorder, schizophrenia, substance abuse, post-traumatic stress disorder, eating disorders and dementia (keeping with the trend, depression and anxiety are the leading causes of mental health problems among working age-adults in India and China). Surveys show that women are more susceptible, that there is a clear link between poverty and mental disability, and that more young people than ever are reporting mental distress.
In countries such as India, low on resources and mental health knowhow, the situation is exacerbated. It doesn’t help that less than 1% of the country’s national health budget — already at bare-bones level — is allocated for the care and treatment of mental illnesses. On the bright side, India was the first developing country to launch a ‘national mental health programme’, back in 1982. The ‘district mental health programme’ came as an added layer in 1996. Neither has accomplished enough.
The Mental Health Care Act, which became law in May 2018, has gone further than any previous legislation to “protect, promote and fulfil” the rights of India’s mentally ill. There are complications with the new act, though, mainly the lack of clarity about where the resources to implement it are going to come from.
No matter the law or their programmes, governments at the centre and the states cannot by themselves do justice to the needs of people laid low by mental disorders. Philanthropies, nonprofits and civil society have to pitch in and that is where organisations such as the Tata Trusts have made a contribution.
Through grants, collaborations and direct implementation, the Trusts have for more than 40 years supported projects and institutions working to help India’s mentally disabled. The Udaan initiative reinforces the commitment of the Trusts to the cause of mental health. It could well be the most impactful of the lot.
Mr Tajne, a retired accountant, has spent in excess of 30,000 from his meagre savings on Pallavi’s treatment. Being in the programme will ease the financial load. “She lacks any real understanding of the world around her and she has these spells when she becomes uncommunicative and distant,” he says. “My hope is that this treatment makes her better. Her mother and I will support her for as long as we are around, but what after that?”
Sachin Bansod, a 22-year-old from nearby Ghorad village, is another who stands to benefit from the programme. “My son lost his mental balance when he failed his standard X exams,” says father Sudhakar Bansod, 56, a former mill worker who now ekes out a living as a security guard. “I’ve spent my earnings of the last five years on him. He’s my only son and I have no choice, but I can’t do it anymore.”
The stigma of mental disorders is stronger in rural areas than in urban centres and that makes it tougher for patients like Pallavi and Sachin. “Our job is to seek out and find those with mental problems,” says Archana Satpute, a community health worker with the central government’s National Rural Health Mission. “Not every family we visit is willing to admit they have a member with a mental disability. It’s not like when someone has a heart condition or cancer.”
Ms Satpute is an ‘accredited social health activist’, better known by the acronym Asha. These activists are the mainstay of the screening-and-detection operation in DMHP. “Patients get care and medicines closer to home through this programme,” adds Ms Satpute. “They don’t have to go to Nagpur or to a private clinic; they save on money and time. We have 10-15 people come to our weekly clinic in Kalmeshwar and the service we deliver is a lifeline for them.”
Be it with the hospital or the district programme, the glue holding it all together is the Maharashtra government’s involvement in what is the first-ever partnership in India between a philanthropy and a state to reform psychiatric care and treatment. “This is an immense example of political will and it’s not happening because there’s a vote bank for it,” says Tasneem Raja, the programme lead for Udaan. “We want to see this scaled up and scale will only come through collaboration with the government.”
Udaan has taken flight and it is climbing still. “I would say we are at a success rate of 60-70%,” adds Ms Raja. “We have not crossed the stage of reforming structures; this is going to take a little more time.” Beyond the specifics of the enterprise itself, Ms Raja lingers on the dividend to be had if civil society learned to care. “Each one of us has a role to play if we want change to happen in mental healthcare. All of us have a stake here and together we can make a difference.”